Joy received a call this morning from the Transplant Team Coordinator to discuss and obtain her approval for additional surgery on her stomach after the transplant. It is called a stomach wrap and is designed to reduce acid reflux, which would otherwise destroy the new lungs if not controlled. The stomach surgery should be performed several weeks after the transplant. She will receive nourishment through a feeding tube and will not be allowed to eat or drink anything after transplant until the stomach surgery is performed. Her decision to agree to this plan was made easier since they will not transplant her without including the subsequent stomach surgery. No burgers, no chocolate, no nothing for weeks! Sounds like fun?
We are therefore anticipating activation as early as this weekend or sometime next week. Once activated, wait time will depend upon the availability of a suitable donor.
Joy continues to participate in the required daily excercise, lectures and workshops and encouraged that she may finally receive new lungs soon. Still an extremely difficult decision.
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No burgers-no chocolate? How much abuse can a person take? You will go back to Illinois looking like a super model!! Love and Prayers, Sharon S.
Joy,
My daughter is a member of Kingsford UMC and has updated me on what has been happening. I am going to assume that you are at Duke and they are one of the best transplant centers. Remember that the journey is tough and requires strict adherence to "the program". But you can make it just as I did and so many before you. In fact my nurse coordinator has told me that I'm "obsessive about your health but that is a good thing b/c that is why you're still alive after nearly ten years" (this Oct 19th). I had IPF and had two choices have the transplant or die. I went back to work 6 weeks after my transplant , driving after 3 weeks, and traveling all over the US and Canada after 8 months. Life is definitely good and my spiritual growth has been accelerated by the experience. If I had to do it all over again, I would chose to get IPF and have a transplant for without it I would not have met God.
May you be blessed with a successful transplant and no "bumps in the road to recovery"
God bless,
Damian Neuberger, Ph.D.
Bilateral 10/19/97 IPF Loyola
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Joy and Wayne, Thank you for providing us with a journal of all that is happening! We are so thankful to be able to travel, in some small way, along with you on this journey. I could for go the burgers, but chocolate? We'll double our prayers for you!!!! Now you are all prayed for daily, hourly, and sometimes minutely!
Joy, remember when you wished you had had time in your schedule to work out and pamper yourself? Think of P.T. as now getting that tim. Then remind yourself you really weren't missing anything back then.
Love ya much!!!!! Jaynellen
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